How does being chronically ill make you feel?
Wow. This is going to be a tough one to write. I know that already and I haven’t even really started it yet. I have this automatic tendency to gloss over my illnesses, make them look better, easier to handle than they actually are. Physically and emotionally. But I’ve got my music on (a bit heavy, angry music from my ‘old skool’ playlist), I’ve spent too long sitting thinking about what to write, how to write, maybe trying to work out how to spare people’s feelings, how to shield them from the harsh realities of life with a chronic illness. But then I realised that, that’s not the point, not of this blog OR of this challenge. So…*deep breath* I’m just going to write from the heart, brace yourselves, this might get messy.
You remember that playlist I mentioned (currently on Devil Without a Cause – Kidrock… I know, random right) there’s a good reason it’s on. It’s to remind me of better days, healthier days, who I used to be, in another world and, another life. Man it feels like that, it really does, that I used to be this other person, a lifetime ago. The point of this being that i’ve already given you an idea of how my chronic illness collection makes me feel physically (oh look Spineshank’s on now) but, if I’m honest, it’s so much easier to cope with the physical side. I find my ways to get around them, my odd little ways that allow to me function. But the honest truth is I can never be who I used to be, I can never be who I want to be. The emotional/mental side is SO much harder to bare. You hear lots of chronic illness sufferers talking about grieving their old life, who they used to be. I can tell you there have never been truer words. And, just like loosing a loved one, the grief is always there, you simply learn to deal with it, push through it. Easier not better.
When I think about how my collection of chronic illnesses make feel it simply a stream of words in my mind, which, if I’m honest scare me a little to delve into. But in the interest of raising awareness and explaining to others what it’s really like I AM going to go there…. although you might have to bare with me. So… here’s what runs through my head;
Isolated, yep, I used to be so social, I used to go out every night, even when I was working, I was always with people. Now, now I spend most of my time in the house, alone. Even when there are people here I am often trapped in my bedroom, too tired, in too much pain and the thought of socialising is too much (even with Chris), it’s too hard, too embarrassing. The isolation is caused by the illness and only the illness. The want to be social is there. It’s not lack of want or even opportunity (I’m still invited to places) its actual inability and that makes it harder. If I didn’t want to be who I used to be, even occasionally (for example, I would never swap Wildchild to be able to go out) it would be SO much easier to deal with emotionally.
Lonely…. check. Even when I am around people I’m lonely, I’m isolated from them in a way that someone without a chronic illness can’t really understand, but I’ll try to put it in a way that might help. Have you ever had to go out to run an errand or there was simply something you had to do, that could not be left undone, when you really weren’t feeling well? You feel sort of like you’re in a bubble, present but not really there? Watching, listening but not really understanding? Almost like you’re dreaming the entire thing? That is what social interaction often feels like to me, like I am present but not involved. I speak but don’t remember what I say, listen but don’t remember what I hear. My chronic illness collection sticks me in a little bubble. When I am at home, when Wildchild is in bed and Chris is here a normal person would be able to spend time with him. Me, no. I am in my bedroom because the day has been too much and I cannot find the strength to spend time with another person (even one of the three people in the world I am most comfortable with), even when I can (and therefore do) manage it, I am rarely (if ever) present, not really, no matter how much I want to be. That stupid bubble, I want to bang on the walls of it and scream sometimes.
Chronic illnesses like the ones in my collection rob you of your independence, often completely and suddenly. Mine was stolen gradually over time, slowly being able to do less and less for myself until it was practically nothing. The little bits of independence someone with my diseases has, has to be SO carefully thought out. Every tiny thing you do has pay back. It steals some of your energy, some of your spoons, (if you don’t know about the spoon theory you can find the story here.) Those things that you can’t do with your limited amount of spoons someone else has to do for you. When you only have the equivalent of ten spoons per day and eating takes two each time, going to the toilet is two/three and don’t even think about having a bath or a shower. That leaves you unable to do pretty much anything else. Now that must suck when you’re old but this started happening to me at 19, and I can tell you, it’s devastating.
Trapped. I’m trapped. Physically, emotionally, mentally, the works. I am trapped inside my home the majority of the time. I am trapped in the darkness at lot, I am almost always light-sensitive to some degree so the majority of my life is spent in rooms that are either dim or dark, wearing sunglasses. I am trapped in my bed and in my wheelchair most of the time. I am trapped by my cognitive problems. I can’t think through the fog in my head and I can’t find the right words to explain what I mean and then they get muddled. It takes a lot of spoons to process what people are saying let alone understand and provide a suitable response. I am trapped in my head.
It’s suffocating. Being limited by your body, by pacing, by routine, by medication, by legs that don’t work when they don’t feel like it. By a mind and by senses that cannot cope with the world. Being restricted by a body and brain that does not respond the way it should, work the way it should. It’s suffocating not to be the person I want to be, the wife I want to be, the mother I want to be. When my Asthma flares it’s physically suffocating but it is emotionally suffocating ALL of the time.
I am invisible. At least I feel that way. I used to be midwife, bringing life into the world. I trained as a social worker and made a difference in people’s lives. I was a barmaid, I got to have fun, chat to people and earn my own money. Now I am just Jen the mum, Jen the sick person, Jen the person that is rarely present. Invisible. Some of my illnesses can’t be seen but they force me to become almost completely invisible to the world. I am nothing but a statistic, another disabled person that is “just tired all the time” and “just sits around doing nothing”, another drain on the systems of the tax payer and the NHS. There is no cure, no treatment and no known cause of some of my chronic collection and therefore I am mostly invisible to the medical profession. There is nothing that they can do to help me, save what they have already done, which didn’t work. I am invisible to the majority of scientific research as there is little to no funding to find a cause and treatment for the disease that ails me most. Unseen, abandoned, yet crying out for help. I just want to be able to make my own way in the world, to be visible again.
I may not actually be forgotten, but the majority of the time it feels that way. Because I’m invisible people don’t think of me, they don’t invite me when prehaps they could because they know I can’t go. They don’t want to upset me, and, granted sometimes it would to know what I’m missing out on, other times, I would feel less forgotten. Don’t worry, you can’t win, but then again neither can I.
Disbelieved. This is a BIG one. Since the start of my symptoms I have been disbelieved. I was disbelieved by my parents when I was young and simply too tired to go to school as it was all too much, but of course at that point I couldn’t have explained why, and, as a child who hated school from the get go, they can hardly be blamed. I was disbelieved by the lecturers and staff on my midwifery course, but once again, I had no diagnosis, no plan, no anything that was set in stone to tell them or show them. I would be able to work for a week, be too ill for a week and be back the next, what else were they to think when at this point in time I was beginning to believe it was “all in my head”. GP’s, yes I was disbelieved by them, I needed their help, I needed their understanding, I needed their belief that I knew my body and that something was wrong. I needed to be able to be sit in front of my GP who had known me since childhood and him believe me, I needed to be able to sit there and, even when physically throwing up blood in front him, NOT be told “it’s all in your head” when it wasn’t. And do you know what I didn’t need, ten years down the line I REALLY didn’t need, to strike another doctor off my “will see” list because they “don’t believe ME exists” *yes, even now, despite the fact that it has been a recognised neurological condition by the WHO since the 1960’s and has it’s own NICE guidelines*. I really don’t need to STILL be disbelieved by the public, by the scientists, by members of the medical profession. I never wanted to be disbelieved by members of my family or by people I once called friends. I don’t need to STILL be disblieved by the media. When you already have to deal with everything that comes with invisible, misunderstood, chronic illnesses you REALLY don’t need to fight to be believed as well. To access help, healthcare, benefits, social care, support. So people, just DON’T okay?
My life is spent watching. It is spent watching my husband, my family and my friends have a life whilst I don’t. It is spent watching those people have the independence that I don’t. It is spent watching my daughter grow up whilst I miss all these precious opportunities to do the things with her that I would want to. I watch as my precious child suffers anxiety attacks when leaving me because “my mummy might end up in hospital and I wouldn’t be there to look after her”. I watch as scientific discoveries are made that help to cure and aid people with other chronic illnesses, and whilst I am so happy for the sufferers of those diseases, mine is never one of them. I am watching myself chug down handfuls of medication 4/5 times a day in the hope that it will help. I am watching, knowing the chance is that this medication (taken on the “it’s helped some people with your diseases” hope) may well not help my conditions and instead shorten my life expectancy, more than it has likely already been shortened (but of course, no one really knows). I am watching all these support aids turn up at my house to “help me regain my independence” and whilst I am so happy to finally receive this support I also want to scream at the top of my lungs “I’m 32 not 90 I’m not supposed to need this stuff”.
I am existing. I am not living. If parts of my body just didn’t work correctly, I could LIVE with that. You can have a full life in a wheelchair if your legs do not work. You can live a full life if your diet is restricted. You cannot live a full life when you need the dark, the quiet, your legs don’t work when they don’t feel like it but your arms aren’t strong enough to support you, when you constantly feel like you have the flu, on top of a hangover whilst all your muscles and joints are screaming. You cannot live a full life when you constantly have to think through cotton wool, your words come out backwards or wrong, when you can’t remember your own name or where you live sometimes. When you cannot talk to people you don’t know, because you might not understand them or they might not understand you. When you cannot process information even with the speed of a toddler. When you need a “translator” despite the fact that you speak the same language. When you are very well-educated and yet, you can’t read a book anymore. It’s not living it’s existing.
This IS what it is like to live with chronic illnesses, this is the emotional side. But the point is, and I think this is the biggest truth, it IS my new reality, and I can either lie down and take it, fall into depression and be even less of a person than the already limited person that I am. OR I can embrace it, realise this IS my life now and, restrictions or not I AM going to make the most of it. I have my down days, everyone does and I have learnt that it’s okay to have them, to scream, cry, throw a strop and yell “it’s not fair” until the cows come home. To do this and know that whilst yes, there are many people worse off than me there are also many, many people better off than me and that sometimes (but only sometimes) it is okay to have a “woe is me” day, especially when feeling extra awful. But the MOST important thing is to have that day/s and then pick myself up, dust myself off and look at the positives. As, there is always something, one little thing in everyday to be thankful for.